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Updated on May 28, 2024
In medicine, the term “indolent” refers to a disease that lasts for a long period of time, but does not change significantly over that period of time. Indolent systemic mastocytosis (ISM) is a type of systemic mastocytosis, a group of disorders where the body produces abnormal mast cells. Mast cells are a type of white blood cell that play an essential part in the inflammatory response that protects the body against infections and injuries.
ISM is a lifelong condition, but it typically does not get worse over time (though it does progress to a more advanced stage in up to 5 percent of cases). Generally, people with ISM have a normal life expectancy when compared to people without ISM. Unlike the more advanced forms of the disorder, ISM does not cause severe symptoms or damage to organs.
While most cases of ISM do not progress, all cases of ISM require treatment. ISM can cause a number of uncomfortable symptoms that can interfere with everyday life. Having ISM also puts a person at risk for anaphylaxis, a life-threatening allergic reaction that requires emergency medical treatment.
There is no cure for ISM, and treatment is focused on reducing symptoms, preventing complications, and being prepared for emergencies.
What healthcare providers treat ISM?
Treatment for ISM may involve different healthcare providers with different specialties, but it typically involves a hematologist and an allergist/immunologist, and may include additional specialists and providers:
- A hematologist is a medical doctor that specializes in blood disorders.
- An allergist/immunologist is a medical doctor that specializes in allergic disorders and disorders that affect the immune system.
- Pharmacists are an important part of a healthcare team, providing education on treatment with epinephrine and information about potential drug interactions.
- For many people with ISM, a primary care provider is the first provider they see when they experience symptoms or do not feel well, before being referred to an immunologist and/or hematologist. After diagnosis, primary care providers continue to play an important part in managing ISM, including preventive care, treatment for illnesses, and addressing other conditions or concerns.
- If ISM is causing gastrointestinal (GI) symptoms, a healthcare team may include a gastroenterologist, a medical doctor who specializes in the treatment of disorders that affect the GI tract.
- If ISM is causing symptoms that affect the skin (such as lesions, itching, or flushing), a healthcare team may include a dermatologist, a medical doctor that specializes in skin conditions.
- ISM can be a difficult condition to live with, and it can affect quality of life and mental health. A mental health professional can be a valuable addition to a healthcare team.
Finding a specialist
ISM is a lifelong condition, and treatment can change over time. This means a person with ISM may need to work with different healthcare providers at different points in their treatment.
If you need to find a specialist, here are some steps to get started:
- Ask your current healthcare provider—such as your primary care provider, immunologist, or hematologist—for recommendations.
- Search using your insurance provider’s website. This can help you find a specialist that is in-network, and also help you find specialists whose office hours and location work for you.
- The Genetic and Rare Diseases Information Center (GARD) can provide information on finding specialists.
- You will want a specialist who is familiar with ISM and ideally has experience treating other people who have systemic mastocytosis. Before making an appointment, it’s a good idea to contact the office and ask about experience with systemic mastocytosis.
- It helps to keep your medical records organized. The specialist will need information on your diagnosis and treatment. Your current healthcare providers can supply documents related to your diagnosis, including test results and information on any and all medications you take (including over-the-counter medications and any supplements).
- Prepare for your appointment. It can help to write down exactly what you want to discuss and to have a goal for your appointment. Be prepared to discuss your symptoms and diagnosis.
After the appointment, set aside some time for yourself to think about how it went. How did you feel about this provider? About their office and staff? How was their communication style? Did you get what you needed from your appointment? Do you feel confident in how your symptoms and concerns are being addressed?
